The Lessons We Learned From MS, COVID, and Each Other

Welcome back to An Empowered Spirit! I'm so happy you're here.

After taking a break from blogging for nine months I'm back and it feels wonderful being here with you.

The past two years have been so crazy that we all needed a break of one sort or another, don't you think? Sometimes it feels like we're living in a Robin Cook novel.

cat with big green eyes hiding under a blanket

Wake me when it's over!

One of the lessons we learned from the pandemic is how crucial it is to have a safe place to be nurtured and cared for when the world feels cold and out of control.

After I was diagnosed with MS many years ago, I searched for the best ways to cope with my new reality. It took a while, but I started finding answers to what I needed. When I created An Empowered Spirit, I wanted to share these insights with you on what helped me feel less lonely and afraid. The most important first step was finding the right...

Community.

There's magic and power in finding the right community, where people feel safe to tell their stories and share their feelings. The right community can offer unconditional support and comfort, and when you find that it feels damn good.

multiple sclerosis community

The power of community is the comfort and unconditional support you find with others

This year marks the tenth anniversary of An Empowered Spirit! A lot has changed in the MS landscape since 2011. What hasn't changed is my continued commitment to being a reliable source for you for all things MS!

To celebrate our anniversary we've updated An Empowered Spirit thanks to a generous grant from the HealtheVoices Impact Fund. I'm deeply grateful to HealtheVoices and Janssen for their continued support and generosity.

Multiple Sclerosis Blog Anniversary 2021

When I received the grant it was the nudge I needed. I'd been feeling burnt out from blogging, lost, and wondering what I should do next. HealtheVoices unknowingly pushed me into the "stop overthinking everything and just do it" mode.

So I'm getting off my tush to move in new and different directions for the next ten (+) years.

Like Michael Fox recently said about his journey with Parkinson's, it gets tiring to constantly make lemonade out of lemons. I quite agree. At this point in my life, I see a lot of things about life and MS differently, so I'll be focusing on topics with a fresh perspective. What will they be?

Wait and see!
MS
I'm busy planning new content to serve your needs, in creative. inspiring, and informative ways.

In return, I'd appreciate constructive suggestions or thoughts on what you're interested in hearing about. You can leave a comment below or reach out via the contact page.

What's new on An Empowered Spirit:

The new design of the blog reflects my love of every type of flower. They are beautiful and thrive despite adversity, just like the MS community.

Sixteen peony bushes are part of nature and this blog

My father planted sixteen peony bushes along our driveway. Here they are for your viewing pleasure.

“Like wildflowers, you must allow yourself to grow in all the places people thought you never would.” – E.V. 

Cathy Chester - MS Advocate - New Blog Header

CLICK on the HOME, ABOUT, MS RESOURCES, PRESS, and CONTACT buttons located at the top of the page to find exactly what you need.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Khalil Gibran

Disability and multiple sclerosis accessibility tool

NEW! An accessibility tool is located on the top left corner of every page to make pages more usable for you.

My mission continues to be to empower, inspire, and educate the multiple sclerosis and disability community, and their loved ones.

Now onto a special SURPRISE to start the celebration! Here's my first interview to christen the new blog. Drumroll, please...

After being interviewed twice by MS advocate, actor, voiceover artist, writer, and rapper Damian Washington I turned the tables on him. I chose Damian because he's smart, savvy, and very funny.

As Damian says, if you have to live with an incurable disease you may as well hang out with the cool kids.  He's definitely a cool kid.

Damian soared to the top of the advocacy game at warp speed and recently won TWO awards from WEGO Health: Hilarious Patient Leader and Best in Show: YouTube. Let me know what you think about our conversation.

 

With a party hat on and a grateful heart, thank you for helping us begin the next chapter of An Empowered Spirit in the best way possible: together. I've been enriched and inspired by your company and hope to see you return again and again.

END NOTE: Thanks again to HealtheVoices for your leadership program that supports the work of online health advocates. Your dedication and commitment to us are deeply appreciated.

 

How Adversity and Vulnerability Are Powerful Teachers

By the time you reach my age you've learned a lot about vulnerability and adversity. Unless you've been extraordinarily blessed there's no way to avoid them. It's no secret I was struggling with extra health issues for many months. This left me feeling a little blue and vulnerable. I was home for weeks on end, unable to drive due to MS and experiencing pain from SIBO (small intestine bacterial overgrowth.)

I cancelled countless social and work-related engagements, unable to have an active life. Like Ferris Bueller said life moves pretty fast. I miss the old me.

To make matters worse I had to cancel a networking event sponsored by my employer, Health Union. I was really looking forward to it for months. It was a chance to finally meet the people I work for and the contributors I enjoy working with.

vulnerability

Finding empowerment when living with MS

I was feeling pretty low when I decided to do something I often do when I need inspiration. I looked at a few TED Talks.

I was completely galvanized by Aimee Mullins, an American athlete and model, famous for her athletic achievements and born with a medical condition that resulted, at the tender age of one, in the amputation of both legs.

Aimee talked about looking at disability through a different lens than the definitions offered in dictionaries:

Vulnerability, disability and living with MS

Credit: Webster's New World Thesaurus, 1982. Courtesy of Aimee Mullins' TED Talk "The Opportunity of Adversity"

Useless? Wrecked? Decrepit? I found myself grinding my teeth when I read this.

She explains her idea that:

"Adversity isn't something we need to get around to live our life. It's part of our life. Our responsibility is preparing for adversity and to meet it well. Adversity opens door for human potential."

I encourage everyone to watch Aimee's talk. It will empower you to think about the endless possibilities of what you can accomplish in your lifetime.

"Truthfully, the only real and consistent disability I've had to confront is the world ever thinking that I could be described by those definitions." ~Aimee Mullins

I'd love to meet Aimee and give her a great, big hug for helping me change the way I see myself.

The power of vulnerability when living with chronic illness

I also found inspiration with Brene Brown. She's absolutely brilliant and I've listened to her speak hundreds of times. Her thoughts on humanity in "The Power of Vulnerability" always resonates with me. It's about connection, heartbreak, the feeling of being excluded, shame, fear and being fully vulnerable.

These are subjects we may talk about on a therapist's couch or to our closest friends. Otherwise they're discussed in hushed tones. That's nonsense. These feelings are experienced by the majority of people. We needn't be ashamed of simply being human.

I often struggle with these emotions. It's part of the fun of living with chronic illness!

As Brene says, "We're imperfect and wired for struggle but are worthy of love and belonging."

Absolutely.

She explains:

We need the courage to be imperfect,

To have compassion and kindness for ourselves first and then to others,

To have connection as a result of authenticity,

To let go of who we think we should be, and instead, be who we are.

We need to embrace vulnerability. It is the birthplace of joy, creativity, of belonging and love.

We need to let ourselves be seen, deeply seen, vulnerably seen.

We need to love with our whole hearts, even though there's no guarantee.

Practice gratitude and joy.

Believe that we're enough.

 

TED Talks are amazing. They can inspire, educate, encourage and give us hope. My spirits were lifted by these two intelligent, passionate women. I hope they'll lift your spirits, too.

Thank you for allowing me the honor of sharing my journey with MS with you. I hope by breaking myself open I've helped you feel better in some small way.

Why the Disability March is an Important Part of the Women's March on Washington

I submitted the following piece to several news outlets in advance of the Women's March on Washington. Crickets. At this late date I decided to publish it here for informational purposes. The links provided will be helpful to the disability community and their loved ones in the coming years. 

Women's March

When I first heard about the January 21 Women’s March on Washington and their nationwide sister marches I was excited. After all I consider this my 1960’s, a time when women must use their voices to protect our rights that were negatively attacked by the president-elect.

To that end I’ve been busy signing petitions, writing articles, posting news stories, calling legislators, attending meetings and becoming a social justice activist to defend the rights of all American citizens.

I considered going to Washington to march, then changed my mind to join a friend marching in Philadelphia. With accessibility on my mind the logistics of the day caused me great concern. As the day drew near I knew I’d be unable to walk the necessary miles, doubting I’d be able to keep up with my able-bodied friends.

According to the 2010 U.S. Census about 56.7 million people have a disability. I am one of them. As a women with a disability I will fight for my rights along with those of other disabled women.

As I began reading posts on several social media platforms about making plans for the march I began feeling invisible. When I thought about it I realized, once again that something was missing.

I read through the Unity Principles of the Women’s March and noticed an absence of inclusion of the disability community. I was disheartened.  

As the mission of the Women’s March states:

“In the spirit of democracy and honoring the champions of human rights, dignity, and justice who have come before us, we join in diversity to show our presence in numbers too great to ignore. The Women’s March on Washington will send a bold message to our new government on their first day in office, and to the world that women's rights are human rights. We stand together, recognizing that defending the most marginalized among us is defending all of us.”

Absolutely. To defend those who are being marginalized. This is crucial. Yet historically the disabled have been globally ignored. Now is the time to end that discrimination.

We are not invisible. We are here. We have voices. We add value. We matter.  

When the president-elect mocked a disabled reporter we were marginalized. With ACA being threatened with the possibility of millions becoming uninsured we are being marginalized. And when we’re not mentioned among the important groups being threatened by the new administration we are being marginalized.   

So I was feeling pretty low about the march, asking myself who will support us? I began to do some research and found my answer.

First, I found a group called Disability March. Created by Sonya Huber, the Disability March provides a way for people like me to participate in an online-only march as a contingent of the Women's March on Washington.  

By emailing them a photo of ourselves with a short explanation about why we feel strongly about the march, they’ve provided us with an opportunity to speak our minds. Here are four examples :

According to Sonya Huber:

“I started the online disability march after talking with my friends about how it would be hard for me to go to DC and how sad I was about that. All three of us have mobility/health issues and are writers, so I thought a blog would be an easy place to start. In particular I wanted to open up the idea of activism and challenge the idea that the only way to be active is to go physically to a place. I think demonstrations and marches are so important, but there are so many people who will be negatively affected by Republican policies who cannot travel to protest.

I contacted the Women's March organizers early on and made some edits to our site based on feedback from them and from other writers, and we just became an official co-sponsor of the march last week.

As I mentioned in the Bustle article, I am glad that the organizers of the march added a statement about disability as a separate bullet point of the unity principles, but it's important for the sake of history to know that it was left out initially, just as a reminder of how often disability is not viewed as an intersectional issue at an equal level to other elements of our identities.

I do support the march and I applaud the huge amount of effort and care the march organizers are taking. I also am very excited that the march organizers are not going for the lowest common denominator but instead explicitly mentioning racial justice as a cornerstone of the march, as this is where progressive movements need to orient!

If people want to get active in the Disability March, all they have to do is send an email to disabilitymarch@gmail.com. We will also be tweeting on Friday and Saturday with the hashtag #disabilitymarch.”

Terry Marttinen, a member of the Disability March, explained why she joined::

“For me broad-based inclusion of people with disabilities is fundamental in view of my experience and studies. I supported this project early as a participant because I think it opens up space for a range of people with disabilities to voice protest over issues affecting the U.S. and globally. It is a way to promote meaningful inclusion in women's movements with potential for future direct activism in U.S context.

Then I found Women’s March on Washington - Disability Caucus (@WMWDisability). On their Facebook page they state:

The disability community is often forgotten and left out of the political, economic, and social spheres. It is time that we have a prominent voice in the social justice cause. As we have done throughout history, we will join other groups to support social justice, equality, and unity. Sign up for assistance: http://www.signupgenius.com/go/9040a4badab2cab9-signup 

It’s hard enough living with the daily struggles of a disability, but the double whammy is when you’re unable to join others in a fight you strongly believe in.

That’s why I’d like to thank Sonya Huber and her friends for creating the brilliant idea of the Disability March.

I’d also like to thank the kindness of a stranger who, on Facebook, asked if she could carry my name on a necklace so I could “walk” in Washington.

Thanks to an old friend who knit a purple hat (the “color” of the march) to wear in my honor as she marches in Washington.

Women's March

Thanks to Suffering the Silence this badge will be worn on someone's coat at the Women's March on Washington. We walk together.

And many thanks to a group I just “met” called Suffering the Silence whose campaign #MarchWithMe matches those unable to march with those who’ll march in their honor.

To sign up as a Mentor or Supporter of Suffering the Silence simply send your name and a photo of yourself to http://www.sufferingthesilence.com/single-post/2017/01/12/MarchingWithMe Then go to their website to learn more about their commitment to empower patients, friends and family to speak out and share stories. They are doing tremendous things to “transform the medical and social perception of those living with chronic disease.”

There are silver linings in everything, and despite dark clouds ahead I’m energized by the commitment of many to stand together for those being marginalized. I am proud to be part of the Women’s March and the Disability March and all they stands for. I hope the Women’s March continues to automatically include the disability community in their vision of inclusion.

This country was built on the idea of human rights for all. Let’s stand strong together to make sure no one’s rights are ever taken away.

(NOTE: I highly recommend reading an excellent article about disability rights being absent from the Women’s March by Emily Ladau at TheEstablishment.com and kudos to Emily.)   

How #Chico's Clothing Makes Me Feel Beautiful

Dear Chico's~

I know it's unusual for someone to write you an open letter but I have reasons that, if you'll hear me out, makes complete sense.

I live with what they call an "invisible Illness," an incurable disease that I've had for more than half of my life. When people see me they don't know I have Multiple Sclerosis because I look fine. But numbness, weakness, fatigue, dizziness, pain and bladder issues silently plague me every day.

Chico's

My Chico's outfit was the perfect choice for celebrating Thanksgiving with my in-laws in Florida

But life goes on and so must I. I dedicate myself to three things that make my life complete: Family, friends and work. All three make me grateful to be alive, and help me stay positive in spirit and moving forward.

Chico's

I loved wearing this comfortable dress for a Saturday night wedding. I received many compliments along with the question, "Where did you purchase it?" (My necklace is also from Chico's)

But life became difficult for me in ways I never imagined. After my diagnosis I didn't feel as beautiful as I used to both inside and out. Pieces of me began to fade away and my self-image took a nosedive. I gained weight from side effects of medications and I was unable to exercise because of my new normal. Enter anxiety and self-doubt.

Chico's

Chico's makes it easy to decide what to pack for professional events. I feel comfortable and confident in every outfit I wear.

Chico's

This fun luncheon lasted a few hours and I felt very stylish in my Chico's outfit.

In my late twenties when I was diagnosed gravity hadn't invaded my body, and my waistline hadn't expanded yet. Even after the birth of my son at age thirty-four my body easily bounced back to my pre-pregnancy weight. Fitting back into my regular clothes wasn't a problem. I still felt reasonably good about myself.

Chico's

I love the vibrant colors of my blouses from Chico's. Their long length looks super over capris. They make lunch out with the ladies or theatre with friends more colorful!

When I was in my forties and my body began to change I was thrilled to find Chico's. Your clothing helped me me feel more beautiful again. That's no small feat.

Chico's

When my husband and I found out we were going to be interviewed for TV by financial journalist Jean Chatzky I ran to Chico's for advice on what to wear. You did not disappoint. I loved my purchase of this long vest, cowl neck and beautiful necklace. They gave me confidence to be myself.

Chico's

This Chico's blouse was perfect for a patient advocate event I attended in Miami.

From your Traveler's Collection that never needs ironing - I love no fuss, no muss clothing for business trips when I don't have time to worry about ironing - to your SoSlim pants that are the best fitting jeans I've ever owned, you make my life easier, stylish and more colorful!

Chico's

A fun work event was made even better while wearing my elegant Chico's jewelry and Travelers pants, camisole and jacket!

A video of my closet would prove I'm not exaggerating about my love affair with Chico's. Your styles compliment my curvy figure and I can mix and match my blouses, vests, trousers, jeans, skirts and dresses in countless ways.

They always make me feel like a million bucks.

[Tweet "How @Chicos clothing made me feel beautiful and took the dis out of ability Thank you #chicos #disability #midlife"]

My photos from the past few years illustrate MY LIFE WITH CHICO'S. Thank you for making me feel good about myself again, and for helping me take the DIS out of ABILITY.

NOTE: I was not paid to write this post. All opinions are, as always, completely my own. I wrote it to let others know how comfortable Chico's is. Each piece is easy to care for and with its high quality material it lasts for years. Chico's clothing is simpler to put on and take off (more than any other clothing I own), making them the perfect choice for the disability and midlife communities.

 

How Positive Changes Are Helping People With Disabilities

Societal attitudes toward disabilities have changed in more ways than I ever imagined and I'm grateful for it. The shift from hushed voices talking about illness to inviting patients to share personal stories makes me feel like I've crawled out of a dark, scary hole and landed in a place where I can feel the sun again.

disabilities

The busy, productive and enlightening few weeks I just had helped me feel this way. If you asked me what I've been working on I'd have to say the main focus has been about Multiple Sclerosis. But if I said it was only about MS it would be like saying Cary Grant had a pleasant face. It doesn't complete the picture.

Indomitability. Character. Compassion. Intelligence. Curiosity. Commitment. Love. Friendship.

It began with a road trip to Philadelphia where I was invited to be on an MS patient panel along with 3 other advocates. It was an incredible opportunity to express our opinions on what it's like living with MS.

Folks asking US to speak OUR truths? That seemed surreal yet amazing.

Sitting at our roundtable were key players from a public relations firm, a pharmaceutical company and a well-respected health and wellness website. They wanted to hear our personal stories, opinions and what we've heard from other MS patients across social media channels.

We were open and honest, holding nothing back, particularly while discussing a recent television ad by a pharmaceutical company that did not portray someone living with MS in an accurate manner.

The patient perspective is alive and well these days. Our voices have become a hot commodity for big business and the medical community, and we are ready to be heard.

Damn, it feels so good.

disabilities

The Four MS Musketeers: Danielle Sciocchetti, Dan and Jennifer Digmann (who I was thrilled to finally meet in person after knowing them for years; they are such dear people) and me. Four people living quality lives with MS

Passion. Intelligence. Creativity. Integrity. Brilliance. Family.

That same week I attended a meeting at the office of the Consortium of Multiple Sclerosis Centers (CMSC), a place where I feel part of an incredible family. As their blogger, and part of the press corps, we had more planning to do prior to CMSC's upcoming 30th anniversary meeting being held at the Gaylord National Resort and Hotel in National Harbor, Maryland. The event brings together over 2,000 MS leaders from around the world to discuss what's new and on the horizon for the MS patient.

disabilities

The meeting welcomes healthcare professionals, researchers and advocates to not only celebrate 30 years of achievements but to also learn more about new and emerging therapies. It's a chance to hear new information that positively impacts both the clinical practice and research. There's also opportunities to attend over 130 hours of educational sessions for the multidisciplinary audience. (To find out more about the annual meeting and what's being offered please click here.)

disabilities

Listening intently to the opening speaker at the CMSC annual meeting, 2015

Now it's time for a little vaguebooking, something I generally despise but for now it'll have to do. I'm working on a project proposal that, if granted, will have far-reaching benefits for the MS community. So please cross your fingers and toes, don't walk under any ladders or break any mirrors while thinking about me, okay? I'm praying for some smooth sailing.

Resolve. Courage. Character. Willpower. Spirit. Spunk. Determination. 

disabilities

My husband and I recently visited the fascinating Museum of the City of New York. If you're in Manhattan and have a chance to visit I highly recommend it. A history and art museum that opened in 1923, one exhibit in particular stood out to me that day.

No narrative is necessary to accompany the following photos. It's self-explanatory. That said I would like to say that every physically challenged person featured in these photos are champions. They are true heroes.

Here's a look at the photos I took from the exhibit "The New York Marathon: The Great Race":

disabilities

disabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilitiesdisabilities

Those of us who are physically or mentally challenged continue to dream of living a "normal" life, where a cure will be found, better medicines will be discovered, and tolerance and compassion will be in abundance.

For now I'll continue to use my voice to help create positive change for my community. For now I'll bask in the glow of seeing others in the disability community thrive in ways none of us ever dared to dream of.

Let's all keep moving forward.

How You Can Help Me Make A Difference

When I wrote my first blog post back in 2012 I knew I wanted to make a difference by providing support and encouragement to people in the Multiple Sclerosis and disability community. I remembered the isolation and frustration I felt when I was diagnosed in 1986. With no FDA approved medications or Internet to lean on the MS landscape looked very different from today.

At the young age of 28 I was frightened about my future and worried I might never have the happy life I dreamed about.

difference gratitude life

Fast forward to 2016 and the words I write and advocacy work I do makes a difference to countless readers. If that sounds arrogant believe me when I say it's not. I'm truly humbled by what reader's tell me, their heartfelt words revealing that I must be doing something right. Some say I've inspired them, giving them a reason to keep fighting the difficult fight.

Others say I've provided them with comfort and a renewed sense that there is always hope. And they thank me for my work.

When I won third place for Healthline's Best Health Blog of 2014 it directed many new readers to my blog. It was also a way for a variety of health websites to find out more about me and what I do.

As much as I dislike contests I can't quarrel with the exposure it gave me and for that I am grateful. My mission to help others by spreading awareness and educating readers about Multiple Sclerosis was multiplied tenfold.

So I humbly ask you to head over to Healthline's Best Health Blog of 2015 today to vote for An Empowered Spirit. Scroll down to "Load More" until you see An Empowered Spirit. If you have a Facebook and Twitter account you can quickly vote using both every 24 hours. The contest ends on January 21.

Please help me continue to do the work I chose to do of paying it forward to the MS and disability community.

I thank you for your interest, encouragement and friendship.

 

 

 

 

Feeling Invisible Doesn't Have To Be A Lifelong Battle

Have you ever felt invisible?

You can feel invisible sitting in a room filled with voices that are louder than yours. No one hears you or looks in your direction. Ouch.

When we're younger we feel invisible and left out when we're not invited to a party or the mall with friends. Maybe we're invisible when a boy doesn't see who we are and asks someone else on a date. Double ouch.

Invisible

But there's another way of feeling invisible. It's when you're fighting an invisible illness, one that's naked to the eye but is quietly serving you a double dish of struggles served on a silver platter every morning, noon and night. Silent, unrelenting and chronic.

Addison's Disease • Autoimmune Hepatitis • Bursitis • Cancer • Colitis • Crohn's Disease • COPD • Cystic Fibrosis • Depression • Endometriosis • Epilepsy • Fibromyalgia • Grave's disease • HIV • IBS • Lupus • Migraine • Multiple Chemical Sensitivity • Multiple Sclerosis • Myelofibrosis • Narcolepsy • Obstructive Sleep Apnea • Optic Neuritis • Polymyositis • Pulmonary Hypertension • Rheumatoid Arthritis • Scleroderma • Sickle Cell Anemia 

Two years ago I wrote about never being invisible despite living with an invisible illness. After being published in The Huffington Post it received even more attention all around social media and throughout the Multiple Sclerosis community. It's message was an important one and it also applies to everyone fighting an invisible illness.

WHOA! Network asked me to create a video for the sole purpose of reading my post. The video now sits on the sidebar of my blog. Its message expresses what An Empowered Spirit is all about: ability despite disability, and never being invisible.

My speaking voice is soft and not very forceful. There have been times when my words were not heard above the roar of the crowd. There have been other times when my voice was heard yet painfully ignored.

When I write it allows my words to spread my message for me, sprinkling themselves over others who are fighting their own struggle, or are looking to educate themselves about what living with a chronic illness feels like.

I vow to fight every day of my life, until there's a cure, to live the best life I possibly can. I do it for my son. I do it for my husband. I do it for my parents and for all of my loved ones who are in my corner every single day. I do it for the Multiple Sclerosis community and for the disability community.

And I do it for myself. Because I never, ever want to feel invisible.

Invisible

 

Thanks to Darryle Pollack for permission to use the WHOA! Network video.

 

How To Create Magic And Memories At The Jersey Shore

Maybe it’s because I was born under the sign of Aquarius that I’ve always loved the ocean, or perhaps it’s that when I was young my parents spent time jumping the waves with me at the Jersey Shore. We’d scream with delight each time we resurfaced while my father quickly rubbed his hands together and joyfully squealed in Yiddish, “Oh, what a machaya.”

Jersey Shore

The beauty of the beach at the end of another day

Whatever the reason, when summertime rolls around I feel restless being indoors because I’m dying to burst outside and head straight to the beach. I long for the feel of clean, white sand sifting through my toes and the smell of salt air rising above the tide.

Cathy Ellen Beach Haven

My best friend El and I enjoying endless days of fun in Beach Haven. (1969)

I blame my parents for my restlessness. When I was young they’d rent a house in beautiful Long Beach Island where the uncrowded beaches provided a playground for my friend’s and me to spend endless hours in the sun. We were girls of leisure who took full advantage of the long hours of swimming and biking, fully slathered in the safety of Coppertone and wearing only our two-piece bathing suits.

Those were the days my friend.

I haven’t been to LBI in years, so I was thrilled when a new boutique hotel, Daddy O, offered me a chance to review their 22 room chic hotel that’s only a short stroll from the beach. I knew their hotel was an oasis on an island offering mostly motels as accommodations.

Photo: Daddy O

Photo: Daddy O

Heading “down the shore” (as we native New Jerseyans call it) midweek we avoided the typical nightmarish traffic and made record time to The Causeway that connects New Jersey to Long Beach Island.

The sight of being completely surrounded by water made my heart skip some beats.

As we headed toward Brant Beach I recognized some old sights from childhood, but after all this time of course the island has changed. As we pulled into Daddy O’s parking lot we were tired and hungry, ready to test out this hip, modern looking hotel.

The concierge, Paul, could not have been nicer and he made check-in a breeze as we looked around at the easy-living interior design with adorable floor to ceiling photographs of beach scenes.

We decided to freshen up in our room before heading to their rooftop bar.

As we made our way through the small check-in area we arrived at the indoor and outdoor sitting areas that were filled with comfortable couches and chairs. In the morning the adjoining area would offer fruit, muffins and Keurig coffee for a quick bite before heading to the beach.

Breakfast Daddy O

A distinctive looking wine cellar separates the lobby from the Daddy O restaurant bar that boasts “modern interpretations of American classics” where both reservations and walk-ins are welcome. Although we were unable to eat there we noticed the enthusiastic, vibrant crowd having fun.

Photo: Daddy O

Photo: Daddy O

Upstairs we were greeted in our Boulevard Queen room by wallpaper of smiling young beachcombers, something appropriate for a shore hotel. The sleek minimalist décor of the room included free Wi-Fi, Keurig coffee and a flat screen TV that we swore we’d never turn on. But, alas, we were staying during the first GOP debate plus the finale of The Daily Show. Our best-laid plans went awry.

DaddyO-0218 resized

Photo: Daddy O

After taking a quick shower I decided my new favorite bathroom accessory was their rainfall showerhead. It felt so soothing and spa-like. Ahh. The adjoining sink and toilet area were a mixture of modern marble with natural wood.

We were now ready for Happy Hour and made our way to the rooftop deck for drinks and appetizers. Our timing was perfect since we were able to grab the best seats at the far end of deck with partial views of the ocean and the bay.

Daddy O Rooftop Bar Photo: Daddy O

Daddy O Rooftop Bar
Photo: Daddy O

Named one of the best rooftop bars in America by The Daily Meal, Daddy O offers the only rooftop bar on the island. Beware that seats fill up quickly! We shared two delicious appetizers, and I splurged with a light ale that I never heard of (and can’t remember the name of.)

We were now full and ready to greet the ocean.

After a short stroll to the end of the street we grabbed a bench to sit, looking out at the vast expanse of the beach. We watched the beauty of nature winding down after another day and I was mindful of how blessed I was at that moment.

The next morning Gary slept in while I grabbed fruit and coffee in the lobby and found a comfortable chair on their outdoor deck. It gave me some early morning quiet time to catch up on social media and read the morning news. When Gary arrived we were ready to begin our day.

Quiet time in the early morning

Quiet time in the early morning

Gary is always vigilant about researching good restaurants and he’s usually right. We found one on his list that served a delicious breakfast. My waffles with strawberries were exactly what I wanted.

Wafles and strawberries

Breakfast at Scojo's Restaurant in Surf City

The diet starts tomorrow.

Wanting to step back into time we took a drive through Beach Haven where my parents rental house was. Then onto Bay Village, the tiny shopping area where I remember my favorite bookstore (I bought “Harriet the Spy” there!), a store that made homemade fudge and a restaurant. Today? Bay Village has tons of shops selling jewelry, food, clothing, miniature golf, an arcade – well, it wasn’t what I remembered. That’s progress, I guess.

For the next two days we spent quality time on the beach, and Daddy O made that easier by providing residents with beach chairs, towels and badges. We also went sittin’ on the dock of the idyllic bay, something that conjured up memories of sailing with my parents.

Sitting by the bay while watching fishermen catch blue crabs

Sitting by the bay while watching fishermen catch blue crabs

Now I was making new memories with my husband, and it was ideal. Having Daddy O as our base made it even better.

I suggest while visiting Long Beach Island making your way north of Surf City toward Harvey Cedars, Loveladies and Barnegat for its natural beauty and charm. You should also consider the south end, at the tip of island, in Holgate where there is the Edwin B. Forsythe National Wildlife Refuge with over 400 acres of barrier beaches, dunes and tidal salt marsh.

I further suggest our favorite restaurant, Black-Eyed Susan’s in Harvey Cedars, a farm-to-table BYOB that offers fresh creations based on seasonally available ingredients.

Black Eyed Susans

My sushi appetizer of fluke with pistachios was exquisite. As an entrée Gary had seared tilefish cooked with orzo, corn, summer beans, garden herbs and an unusual tomato broth. I had crab cakes made with jumbo lump crab, fingerling potatoes and an herb remoulade.

The bread is homemade and amazing, as is the butter. What we didn’t finish we took home. We were not going to waste this incredible bread! (They do charge $5 for it, but it’s well worth it.)

We went to their breakfast truck the next day (think of the movie “Chef”) where I had a breakfast burrito (eggs, rice, black beans, avocado and salsa) and Gary had eggs and turkey sausage on a fresh brioche. YUM. We sat at a table in their cute alcove surrounded by fresh flowers. What a wonderful way to begin our day!

Black Eyed Susan Breakfast Truck

Our two day vacation went by too quickly and I miss the beach already. We'll be back for day trips as long as the good weather holds out. But that's not the same. Nothing is better than spending long summer days at the shore.

NOTE: Daddy O is accessible with a ramp leading into the front lobby. It has an ADA approved queen room on the first floor that is wheelchair accessible. All other queen rooms throughout the hotel are accessible but not for wheelchairs. The Daddy O Restaurant is accessible but the rooftop deck is not.

Black-Eyed Susans has a few entrance steps but is otherwise accessible.

Daddy O Restaurant & Boutique Hotel
4401 Long Beach Boulevard
Brant Beach, NJ 08008
(609) 494-1300
www.daddyohotel.com

Black-Eyed Susans
7801 Long Beach Boulevard
Harvey Cedars, New Jersey 08008

DISCLOSURE: I received two free nights at Daddy O. My opinions for this review are, as always, completely my own.

My #EarthFootwear Shoes Are Made For Walking And That's Just What I'll Do

NOTE: When I found out I'd be attending The Consortium of Multiple Sclerosis Center's annual meeting in Indianapolis I was concerned about the amount of walking I'd need to do. My right leg and foot have been numb for years, and walking long distances can become problematic. So I knew the importance of packing the right pair of shoes. That's when I decided to write a review for the disability and midlife audience, or for any woman looking for a comfortable pair of shoes. Here goes!

The older I get the more discriminating I become about the shoes that I wear. After all I’ve had these feet for over fifty years and I’ve tortured them enough during the days of wearing pointy-toed heels.

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Those days are long gone because now I look for shoes that offer both style and comfort. Whether I’m dressing up or enjoying a casual day I want my feet to feel their best in the shoes I wear.

It’s also important to find a shoe that provides flexibility and stability. Being unable to feel my foot means it’s more important than ever to wear a shoe that offers the kind of structure I can rely on to keep my feet strong all day.

So when the nice people at Earth Brands Footwear offered me a chance to review their shoes I jumped at it. It hasn’t been easy finding a new pair of sandals that meets all of my requirements, and since all Earth shoes offer padded heels, extra cushioning and good arch support I knew I was in the right place.

When I first laid eyes on their Bay sandal I fell in love. (Yes, I’m that kind of girl about shoes.) I couldn’t wait to try those beauties on. And when I read more details about the Bay I thought it's going to be the shoe for me.

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I love the colors, texture and feel of this cushioned sandal.
Photo: Earth Brands Footwear

“An edgy twist on the iconic gladiator sandal with stunning laser cut leatherwork and gold metal studs. Premium leather upper with glove-soft leather lining. Exclusive comfort footbed that cushions your foot from heel to toe and contoured arch support for all-day comfort.”

It was good timing, too, because I was getting ready to fly to Indianapolis for a work-related event. The event was in a sizable hotel and my job would require a lot of walking, something I’m always concerned about since my feet tire easily.

If my shoes are uncomfortable it could spell disaster.

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Photo: Earth Brands Footwear

When I first took my new sandals out of the box I do what I always do first – check their flexibility. I grabbed each end and bent them toward one another. Yup, they were flexible alright. They passed that first test with flying colors.

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The rubber soles of my new sandals provide me with stability when I walk.

Then I put them on. I couldn’t believe how cushiony they were. Ahhh, they felt so good to stand in.

I should have known they’d feel good on my feet. Earth Brands Footwear was originally designed as a health and wellness footwear company, and a Danish yoga instructor envisioned a way of extending that wellness into utilitarian shoes that would provide wellness for the feet.

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Photo: earthbrands.com

The company is mindful of what women are looking for in shoes. They offer contemporary styling with comfort to create a unique collection of footwear for us to look and feel our best as we move around in our busy day.

I wore my new sandals in Indianapolis more than the other shoes I packed. Whether I was wearing a skirt or casual pants my new sandals looked stylish and kept me comfortable all day long.

Now I’m thinking about getting a pair of their slip-on flats (I’m eyeing the Bindi) and I also need a new pair of Mary Jane's (I'm considering their red Bella.) With their free shipping and returns it makes buying shoes online even easier.

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The Bindi - Photo: Earth Brands Footwear

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Bella - Photo: Earth Brands Footwear

What makes buying shoes from Earth Brands even sweeter is their concern for our planet. They want our feet AND our world to be healthy. So they’ve partnered with the nonprofit restoration organization Trees for the Future that plants trees to keep the Earth healthy. Their motto is “Buy Shoes, Plant a Tree on Earth.”

Earth is also concerned about giving back to the community and teaching others about core values. I think that's pretty special, don't you?

One more bonus is if you sign up for their emails not will you learn about their latest styles but you'll automatically be entered into their Monthly Shoe Giveaway!

Now that you know all about Earth Brands Footwear, are you ready to WALK THE WORLD with me? Are you in?

Follow Earth Brands Footwear on Facebook, Twitter, Pinterest and Instagram to keep up with their latest styles and news.

Disclosure: I received a free pair of Earth Brands Footwear (Bay) but, as always, all opinions expressed are solely my own.

Napa In New York: Our Trip To The Wine Country

It’s been awhile since I wrote about travel because, well, life sometimes gets in the way of our best laid plans. I’m back now and eager to tell you about our short vacation that was both magical and restorative. This review will be of particular interest to the disability community, but it certainly applies to everyone because Nature + Wine = Splendor for All.

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Sometimes there are places in our own backyard that we never visit. For us one of them was the Finger Lakes, a group of eleven long and narrow lakes located in the west-central section of Upstate New York. A scenic area with sprawling farmland, rolling hills and wonderful wineries, the Finger Lakes is defined as a “bioregion.” (“An area bounded by natural rather than artificial borders that has characteristic flora and fauna and includes one ecosystem.” ~Wikipedia)

We hadn’t taken a vacation in a long time so we decided to pack up and head to the Finger Lakes before the start of our crazy summer schedules. After a three-hour drive from home we arrived at the Inn where we’d be staying.

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Greek Peak Mountain Resort, Virgil, New York
Photo Credit: Greek Peek Mountain Resort

Greek Peak Mountain Resort, located in Virgil, New York is nestled in the midst of picturesque mountains that, from a distance, looks like a beautiful painting. When we entered the Inn through their glass doors I was happy to read the signs that announced it is both energy and environmentally friendly, as well as an award-winning green leader.

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Photo Credit: Greek Peak Mountain Resort

Once inside the Inn it is both a gorgeous ski lodge and a summer vacation resort with its high vaulted cedar ceilings and A-frame door of glass that allows visitors to drink in the dazzling beauty of the outdoors.

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Photo Credit: Greek Peak Mountain Resort

We checked into our handicapped accessible room on the first floor. A beautiful, bright room, it is large enough to maneuver a wheelchair and the bathroom is fully accessible. There is also a kitchen for those who prefer to cook meals in their room. (We also saw non-accessible rooms that were equally spacious and well appointed.)

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Photo Credit: Greek Peak Mountain Resort

Then it was dinnertime!

We settled into the Acorn Grill, the Inn’s restaurant located on the first floor. It offered a beautiful vista on one side with a buffet area on the other. I wasn’t expecting much in the way of menu choices, so I was happy to be completely wrong. Their menu offered a wide array of entrees and we were not disappointed. Each dish was deliciously prepared with fresh ingredients and dessert? Let’s just say there was nothing left over.

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Dinner at Acorn Grill

After dinner we walked the grounds and to our delight found a lovely, flat walking path that loops around a sparkling lake just begging to be used for boating or swimming.

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We were lucky to visit Greek Peak in between high seasons because we had the path all to ourselves.

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Photo Credit: Greek Peak Mountain Resort

If we stayed at the Inn longer I would have taken advantage of its full-service Waterfall Spa for a facial or massage. And I certainly should have used their state-of-the-art fitness center or taken a few laps in their pool...

Photo Credit: Greek Peak Mountain Resort

Photo Credit: Greek Peak Mountain Resort

A few other items you might be interested in:

Hope Lake Lodge Condominiums (part of Greek Peak): Hotel style condominiums are for sale and include concierge and bell service, 24 hour room service and daily housekeeping.

Photo Credit: Hope Lake Lounge

Photo Credit: Greek Peak Mountain Resort

Cascades Indoor Waterpark: A 41,000 square foot indoor waterpark with over 500 feet of slides, 3 story tube slides, a toddler pool, outdoor pool, indoor/outdoor hot tub and modern wave pool looks like a lot of fun for families to enjoy.

Photo Credit: Greek Peak Resort

Photo Credit: Greek Peak Mountain Resort

Greek Peak Ski and Ride Center: There are thirty-two trails and six aerial lifts that make this a popular ski resort. The Ski Center also offers two surface lifts, a beginners slope, a full service Nordic Center with groomed cross country and snowshoe trails. (The area boasts an average snowfall of 122 plus inches!)

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Photo Credit: Greek Peak Mountain Resort

Outside of Virgil many tiny towns dot the area, and as we toured them we felt compelled to pull over and drink in the beauty of the area.

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We stopped at a few places of note that I’d suggest to anyone planning a trip to this part of the Finger Lakes:

Cornell University and Cornell University’s College of Agriculture and Life Sciences’ Botanical Gardens: After driving around the lovely campus of Cornell University in Ithaca our next stop was the beautiful Cornell Plantations, a part of the University that offers easily accessible pathways leading around beautifully landscaped gardens of herbs, vegetables, perennials, conifers, peonies and much more. It’s an enchanting region of Ithaca that’s made more lovely, I am sure, when the flowers are in full bloom. (NOTE: Most of the walkways are paved, flat and accessible. The path changes in a few areas where the walkway is made up of natural stone.)

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Cascadilla Gorge: This site is idyllic in both sight and sound with eight waterfalls creating frothy cascades that slide down limestone and shale to create wide cascades that can reach 54 feet high. (NOTE: The gorge is only accessible on the grassy park off the parking lot where you can see the creek and possibly one waterfall.)

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Lakewood Vineyards and Winery: The Finger Lakes is known for its award-winning wines found in many of the areas vineyards. We chose Lakewood Vineyards and Winery for our afternoon wine tasting and tour. I’ve visited many vineyards in Napa Valley and the Loire Valley in France and Lakewood is equally beautiful.

Located in Watkins Glen and situated off Seneca Lake, the views from the almost 80 acres of vineyards are breathtaking and, although they are best known for their whites, it also offers 14 varieties of grapes that include Riesling, Gewurztraminer, Cabernet Franc and Pinot Noir. The staff was friendly and knowledgeable and helped make our “tasting menu” interesting and fun.

We decided to try their semi-sweet and sweet Rieslings, although the bottle we purchased was a Long Stem White from a grape that was developed at Cornell. Thank you, Cornell!

(NOTE: There are a few steps to get into the winery from the parking lot and then onto the deck that overlooks the vineyard. A path leading visitors through the vineyard toward Seneca Lake is flat but unpaved. As you get closer to the lake there is a large gazebo to sit and view this magnificent property.)

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We can't wait to open our purchase of Long Stem White from Lakewood Winery!

If you’re looking to get away from it all for a few days I’d highly recommend losing yourself in the Finger Lakes region of New York State. There’s so much to do, and I know we'll be going back to explore the area again and again.

Coming up next: Our private tour of The Corning Museum of Glass and their recently opened 100,000 square foot Contemporary Art and Design Wing. We were completely dazzled and I know you will be too.wine

NOTE: I’d like to take this opportunity to thank Jessica Robideau and Dan Stokes of the Finger Lakes Tourism Alliance for their help and generosity in arranging our vacation. We needed to cancel our plans with them last year and they were both gracious and kind. Thank you both for your patience and assistance.

Disclosure: I received two free nights’ stay and a free dinner for three at Greek Peak Mountain Resort. All opinions expressed, as always, are completely my own.

Why I'm Thankful For My Diagnosis

The philosopher John Lennon (or whoever said it first) famously wrote, "Life is what happens when you're busy making other plans." The life we imagine when we're young isn't always the one that we live. Our paths make sudden turns down unexpected byways, leaving us to survive unchartered territory.

March is MS Awareness Month

March is MS Awareness Month, a time to remember over 2.3 million people worldwide who are living with multiple sclerosis, an unpredictable and incurable disease. Strength, love, hope and courage - those are the words to be mindful of this month.

And, of course a cure.

As February drew to a close I couldn't decide what I'd write about to honor this important month-long event. I mean, what else could I write about MS that I haven't covered already? And what positive spin could I put on it, because that's how I choose to look at my life.

Then it dawned on me.

Why I'm thankful for my MS diagnosis

It's easy to GO ORANGE with Max!

Like Clarence the Angel granting George Bailey the ability to see what life would have been like if he'd never been born (you knew I'd think of a classic film reference, didn't you?) I wanted to write about how different my life would have been without my diagnosis.

Why I'm thankful for my MS diagnosis

I look forward to the day when I can finally say, "I used to have MS." That will be the greatest day of all. In the meantime I'll be mindful that despite my diagnosis I'm surrounded by many blessings. And, like George Bailey, I cannot be a failure because I certainly do have friends - near, far, virtual, professional and furry.

I am thankful for my diagnosis because it taught me self-compassion, survival, to remain curious and to always keep hope in my heart.

About MS Awareness Month

National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the public's awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease, and to assist those with MS in making educated decisions about their healthcare.

To inspire others to create a world free of MS, click here to share your thoughts on The National Multiple Sclerosis Society's website.

Learn more about what MS is and find the latest research from the National Institute of Neurological Disorders and Stroke page called Hope Through Research.

 

 

 

 

Chef Interrupted: Discovering Life's Second Course In Ireland With Multiple Sclerosis (Book Review)

My mission of spreading awareness about what Multiple Sclerosis is and to live a quality life using the abilities we have is why I was thrilled to receive the following note from Trevis Gleason. Trevis is a man I've never met but have known for many years through his stellar reputation in the MS community as an inspiring writer and advocate.

Multiple Sclerosis
As I read his note I thought about the cadence of its language. I could almost hear Trevis speaking with an American English tongue mixed in with a wee bit of Irish brogue. It was endearing.

Then my next thought was, "Of course I want to give your book a look!" because the life that Trevis chose despite a diagnosis of secondary progressive MS is one that exemplifies what it means to live a quality life despite facing adversity.

Let me go back.Trevis Gleason is a former chef who was trained at The New England Culinary Institute. Settling into a directorial position with the California Culinary Academy and opening several cooking schools for the Academy his life abruptly changed after his misdiagnosed ailments turned into a confirmed diagnosis of MS.

Multiple Sclerosis

 

But Trevis' new book, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis is not a book about diagnosis or coming to grips with a "new normal." Chef Interrupted is a celebration of life and the indomitability of the human spirit, illustrating that lifelong dreams can still be realized with a bit of gritty determination, some serious planning, a positive attitude and the ability to laugh at yourself.

And, of course, being surrounded by loved ones, including the furry kind.

His book begins five years after diagnosis, being forced from the job he was trained for, and a marriage that crumbled.

He reveals to the reader:

"If I was to enjoy any of the things I'd hoped to be doing in my far advanced years after a career, I would have to start identifying what those dreams were and create a plan to make them happen. Hope, without a plan, is just a dream."

Our journey as a reader begins alongside of Trevis, from Seattle to a rented, rustic "functional" cottage in West Kerry, Ireland where he remained for the winter. Despite obstacles such as sheep-obstructed narrow roadways, an antiquated heating system, and the general difficulties of beginning a new life in a strange place, the hearty soul of Trevis remained intact.

His masterful tales are woven around the many connections he makes with the lively people of Ireland, his devoted companion, Sadie, an adorable puppy he adopts upon arrival, and the beauty of the rugged countryside that surrounds him.

Rising to the many physical challenges he inevitably faces, Trevis skillfully entertains a steady flow of family and friends who come to visit him. His skills as a master chef come in handy while entertaining, and he whets our appetites throughout the book when discussing simple local food and drink.

We are willing learners about the cultural differences Trevis embraces, and we feel the joy he feels as he immerses himself in his newest homeland.

When Trevis described some of the people he met I was often reminded of characters portrayed in a few John Ford movies. Flavorful characters that Barry Fitzgerald or Maureen O'Hara might have played. Colorful, lively and always fascinating.

Trevis weaves magic through his poetic style of storytelling allowing us to, at times, forget that he's living with a debilitating disease, one that catapulted him to visit his family's roots so far away. His story touched my heart, and I know it will touch yours.

This is not a story about disability but one about finding your joy no matter what life has to offer.

If you've ever had a dream you'll want to take a look at Chef Interrupted. It'll keep hope in your heart and help you believe that anything is possible.

Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis will be released on Amazon on March 1, 2015, but is available for pre-order by clicking here today.

NOTE: I received an advance copy of Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. As always, all opinions expressed are solely my own.

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